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Post by toni on Oct 25, 2007 18:58:42 GMT -5
Okay,
I've asked for permission from the person I'd received the email from...but haven't gotten it yet..and as per my email also states, I'm NOT to share it, so I'll wait until it's "okayed".
But...I CAN tell you what it said (the most important sentence)!
It was short and to the point, and this sentence IS IMPORTANT TO US...AND I SURE DIDN'T LIKE IT.
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This study cannot move forward until it is approved by Kaiser Permanete's institutional review board (IRB).
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So NOTHING is happening YET! The darn thing hasn't EVEN been approved yet obviously.
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Post by Niels on Oct 25, 2007 19:22:56 GMT -5
excellent. the study is a giant waste of money and should not move forward. it should be done by scientists at the CDC, in the CDC's labs, with the total lack of privacy that should happen in a government run, taxpayer funded enterprise. You can FOIA information from the government, but not from a private subcontractor like Kaiser. This is GOOD NEWS. KAISER IS EVIL. lyme.kaiserpapers.infoThey'll be treating morgies the same way they'll treat Lymies. If the CDC lets them, they'll write up a treatment plan that is 100% psychosomatic and antipsychotic based, and then other HMO's will happily accept the plan. It's much cheaper to do that, than actually find out what's wrong, because then you have to actually "cure" it. An example is Kaiser's strong support for the bogus IDSA guidelines for Lyme treatment.
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Post by Niels on Oct 25, 2007 19:32:06 GMT -5
maybe we should stage some protests in front of kaiser (oakland) so that they know we're not going to be bullshittted. kaiser ID doctors are completely and totally full of poop. I got to hear at least an hour rant about how terrible Igenex is, how my LLMD is prescribing long-term abx for other kaiser patients who don't even have lyme ("they only had two bands on their igenex test! "as I hand him a paper on ILADS lyme testing)... and talking crap about Igenex, saying their test results were totally unreliable and giving lots of "false positives" (as I had him their CLIA certification)... "oh yeah, they barely scraped by their certification" The real deal -- and the reason for the trash-talk by a Kaiser ID doc against an LLMD that saved my life and Igenex (the lab that saved my life) -- is a lot closer to what lyme.kaiserpapers.info says: Kaiser seems to run part of the CDC have been after Igenex Inc., of Palo Alto for years. sfgate.com/cgi-bin/article.cgi?file=/c/a/2001/12/10/MN195999.DTL
I am now fully beginning to understand why my LLMD said "Kaiser hates me"...And it's not just because he was an expert witness against them in a lawsuit (which kaiser lost) where a wheelchair-bound MS patient that they'd been misdiagnosing and mistreating for years.... saw my LLMD, got treated... and got out of the wheelchair. IMHO, kaiser needs to be sued into the ground for this mercilessly. Put them out of business, or make them change their ways.
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Post by toni on Oct 25, 2007 19:35:26 GMT -5
Niels,
I understand how you're feeling and thinking. Me too underneath if I allow my anger to get the best of me. But...WE have the media, who can expose US ALL...and ask questions and do everything WE NEED them to do.
You know, I hated being the bearer of bad news, BUT...
CAUSE IT'S TRUE, AND I HAVE TO SAY IT.
The squeeky hinge gets the grease. There are no exceptions in this life and we know that.
This only means we're not there yet. We've not shaken up the country enough to understand the severity of Morgellons. That IS our job. If people REALLY understood how this TAKES and RAPES a human's ENTIRE LIFE - then they'd fear it would happen to them...and take this MORBID MORGELLONS SERIOUSLY! aS GOD knows it needs to be taken.
If we're going to get anyone to move on this and take this seriously that WE ARE SUFFERING A TORTUROUS INFECTION every minute of every day, and so is everyone around us...we MUST get MORE TV and newspapers involved in OUR living torture.
We must TELL them WE are desperate (which is an understatement) and we need their help to publically find out what the status is, and why and how can CDC abandon the American public as it has!
So "if we want" this type of exposure...we need to vocalize this and relay it to the media....they ARE OUR voices, and they're there just waiting.
That IS what got CDC to announce "what they were doing"...they had to. The news and YOU were asking. So that's what's going to get this in the forefront too.
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Post by mercury on Oct 25, 2007 22:38:30 GMT -5
Niels, I'm with you on Kaiser being very bad news. I've been with them for 4 years and what a total waste. They have been much worse then having no insurance at all would have been. -Merc
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Post by pez1103 on Oct 26, 2007 5:01:44 GMT -5
Before you get upset..... This is the timeline that was set forth by the CDC in their RFQ, so the IRB clearance was expected and necessary, and it is not even delayed yet.
The timeline:
4.1. IRB [Independent Review Board] Clearance October 30, 2007 4.2. Database of potential cases (study cohort) November 30, 2007 4.3. Database containing all results of clinical evaluations, Including recorded histories and physicals, laboratory tests (See Attachment 001 for required laboratory tests), chest x-rays, digital photos, neuorcognitive/neuropsychiatric examinations. March 1, 2008 4.4. All skin biopsy specimens and fiber samples collected from case-patients . March 1, 2008 4.5. Electronic database containing demographic information, zip code of residence, relevant past health history, such as medications, provider visits, and hospitalizations for cases. Database should include a unique patient identifier to allow linkage of clinical and other test results with demographic, healthcare utilization, and survey data. April 30, 2008 4.6. Database with denominators for all visits (total and by specialty) and hospitalizations during study period to allow estimation of disease rates in the population. May 30, 2008
Did the CDC definately award the contract to Kaiser?
Toni - Can you ask the person that you contacted WHEN they expect to get IRB clearance? Thanks
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Post by toni on Oct 26, 2007 7:28:49 GMT -5
Pez,
Most definatley.
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Post by toni on Oct 26, 2007 13:12:17 GMT -5
Pez,
I asked for a few things this morn, and here's the reply I just received. So looks it like my 'throats been cut'. So actually NOW I don't know what's what...is CDC still handling Morgellons or Kaiser is "going" to in the future???
Here's the reply:
Rather than disseminating my response to you, I would suggest pointing others to the CDC website for the most current and accurate information. As this is a CDC study, I would prefer that all official, public responses come from the CDC.
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Post by liatris on Oct 26, 2007 15:26:31 GMT -5
Niels, Toni , Pez, Mercury and All - Do you think it might be an easy, effective thing for all of us to cal the CDC's Morgellons hotline and leave the message that we know handing this thing over to Kaiser is passing the buck and will NOT result in us not nagging them any more !? Maybe if we let them know NOW that we know passing it to Kaiser is just a delay tactic (cuz we will eventually know that it did not help get us treated) and that they might as well accept the fact that they (the CDC) are going to have to put their stupid noses to the grindstone and figure this out - maybe it will force them into dealing with it in a realistic way sooner They are doing this Kaiser thing because they think it will be easy and then they will not have to deal with insurance companies having to treat us comprehensively - they will all fall in the non-treatment mode that Kaiser establishes. So --- how many of us are there ? How many phone messages from us ? This is EASY, would take only a minute. What do you guys think ? Any drawbacks ?
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Post by liatris on Oct 26, 2007 15:30:46 GMT -5
the CDC Morgellons "Info" line that you can leave a voicemail message on is 404-718-1199.
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Post by Niels on Oct 26, 2007 15:34:36 GMT -5
Kaiser is acting *exactly* as it is supposed to as a subcontractor (I've been involved in DARPA contracts myself... familiar with the "game")
(1) providing plausible deniability and or legal protection/insulation back to the CDC. This includes insulation from FOIA requests which are required by law for any taxpayer funded enterprise. (2) punting any public commentary back to the CDC, while using "corporate privacy laws" to shield the public from anything new Kaiser learns that isn't part of the contract deliverable. (ie. if they accidentally discover a cure in the process, and file a patent on it, they keep all the $$$, don't need to share any data). (3) A diagnosis/treatment plan that is entirely shielded from public scrutiny, public disagreement, and done entirely behind closed doors as protected by "corporate privacy" laws. The data collected will be the property of kaiser permanente and will not need to be shared with any scientists that doubt their conclusiom, question the data, or the way data was collected. There may be contractual deliverables back to the CDC (which will certainly not be *all* the data collected) and that's all they'll provide and the public will get by FOIA. If other factors are discovered and "hidden" ... they will also be able to hide the data.
This is just the tip of the iceberg w/r/t how things work with "privatization" and "government" ... there's an equally profitable and freedom-robbing plan that's used by the Halliburton's and Blackwater's of the world, for their own ability to commit crimes against the people, while being paid by the government to do it. I'm sure they include points similar to #1-3 in their business plan.
Basically, it's hard enough to get information out of the government. By hiding it at Kaiser, it becomes impossible to get, and they can basically lie and commit any kind of scientific fraud they want in the study and nobody will be able to do anything about it. It's "private."
It's wrong.
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Post by Niels on Oct 26, 2007 15:37:39 GMT -5
the CDC Morgellons "Info" line that you can leave a voicemail message on is 404-718-1199. so some poor secretary is going to be stuck listening, tallying the number of calls, and then hitting "delete" they won't care until some senator calls and makes them care. or they get their funding cut off. or they fire the personal trainrers at the multimillion-$$$ CDC atlanta HQ gym, or....
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Post by felixwillford on Oct 26, 2007 15:45:40 GMT -5
I kept calling all day on numerous occasions the rally took place..........................never got me anywhere. I wanted to know why it was not on CNN. Passed me to another voice mail, then I was cut off. I called again................. didn't get any anwswers about why they were not going to put the rally on TV. I'm sure that I made a pest out of myself by calling constantly, but didn't care.
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Post by liatris on Oct 26, 2007 15:56:49 GMT -5
the CDC Morgellons "Info" line that you can leave a voicemail message on is 404-718-1199. so some poor secretary is going to be stuck listening, tallying the number of calls, and then hitting "delete" they won't care until some senator calls and makes them care. or they get their funding cut off. or they fire the personal trainrers at the multimillion-$$$ CDC atlanta HQ gym, or.... OK - our phone calls probably would have no impact. And you are probably right about what it would take --- however, the more I think about how they operate and how powerful and protected they are - I don't even know if one or two or three senators being in touch would be enough to "make them care", as you put it. So how on earth would we ever bring about their funding being cut off or messing with their gym ? I am not being sarcastic, I agree with you but really wonder how we could effect them enough. It seems that aside from serious and constant rallying, which is hard to do with so many sick and money-lacking people, the only thing would be if they all came down with it - unlikely. Then, again, there is the Michael Moore thing or any Morgy who would like to do a documentary that could be just as good but would not be shown because we are not known as Michael Moore is. Would 20/20 take this on ? Are they owned by the CDC ?
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Post by toni on Oct 26, 2007 15:57:23 GMT -5
I can say what I'm going to do...which I did last year too!
I SENT CDC many times over emails stating that I was letting the school districts be aware of Morgellons!
And I HOPED to accomplish the schools being closed.
Because KIDS ARE at risk, and then so are their parents.
Until someone - Kaiser or CDC states where this insidious infection/epidemic/contamination whatever it is...until they say where it's coming from and how it's caught and how it's cured, the PUBLIC schools should NOT be open.
Cause if CDC can't say whether it's contagious or not...well...that's good enough for me..and I DO believe anyone with children wouldn't want their kids catching this IF there is any possibility of risk.
So that WILL help force them to do something - because they NEED to. Enough is enough.
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Post by liatris on Oct 26, 2007 16:03:56 GMT -5
I can say what I'm going to do...which I did last year too! I SENT CDC many times over emails stating that I was letting the school districts be aware of Morgellons! And I HOPED to accomplish the schools being closed. Because KIDS ARE at risk, and then so are their parents. Until someone - Kaiser or CDC states where this insidious infection/epidemic/contamination whatever it is...until they say where it's coming from and how it's caught and how it's cured, the PUBLIC schools should NOT be open. Cause if CDC can't say whether it's contagious or not...well...that's good enough for me..and I DO believe anyone with children wouldn't want their kids catching this IF there is any possibility of risk. So that WILL help force them to do something - because they NEED to. Enough is enough. TONI --- Oh, that is GOOD ! If anything were to have gotten to the people viewing the last rally - it would have been the signs stating that Morgellons is Spreading ! Did you, by any chance, get any type of response from those letters ? Would you mind posting which email address you used ? Thanks.
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Post by liatris on Oct 26, 2007 16:06:32 GMT -5
THEN - give the CDC's email address to the school districts after scaring them. Gee, I hope it would scare them ?
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Post by felixwillford on Oct 26, 2007 16:27:50 GMT -5
For what it's worth, I have a friend who does children's camp nursing every summer.
There is a "camper's newletter" for all the children's camps.
I know that in the summer of 2006, there was indeed an article in the camp newsletter which referred to a "mystery rash" affecting children.
[glow=red,2,300]The newletter goes to all Children Camps across the United States[/glow].
I just have not spoken with her in a while. Her husband has a weak immune system and she and & have not gotten together in a while.
But, surely UDATES and sites for "children camps" are here on the internet and we could start by contacting them.
The information from 2006 wasn't very clear, but it was morgellons, just not named that. It was only notifying camping instructors/camp nurses to be on the look out for a mysterious rash. It's been so long I just don't remember much except it was brief and didn't have much valuable information but it stinked like "morgellons" being hidden.
Someone knows are children are at risk.
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Post by liatris on Oct 26, 2007 16:38:23 GMT -5
Kmarie - hmm .. that would be the thing to state in the newsletters - that they should be on the look out for strange "rashes". Good idea whether contacting shools or summer camps. Certainly college campuses where people are living in dorms (close quarters) would be good too. The first time I heard about scabies was in college - someone had mentioned that such and such hall (dorm) had a scabies outbreak. Thankfully, I did not live in dorms.
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Post by reasonable on Oct 26, 2007 16:58:39 GMT -5
Folks, if you want to stimulate private research into this disease, IMO a good thing to do would be to emphasize that foreign organisms can live in a human body without much of an immune response and yet a person seems ok otherwise - in fact seems protected from other infections. Stop hushing hatching insects, for example.
The symptoms of this disease imply that _something_ in the body produces a compound that modulates the immunity in a profound way. Consider how dificult it is to keep a well matched organ from being rejected by the body in organ transplants. Here we have a chemical that allows _other_species_ to live in the body with impunity and the body hardly reacts.
Such a compound, when discovered while researching Morgellons, will make big big bucks for those who ID it first, because it seems the most amazing immune modulator yet.
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